Check out the abridged version of this post on the Feeding Tube Awareness Foundation website, where I posted as Chief Communications Maman!
It seems like such an appropriate thing to be writing about my daughter Esmé’s tubie for Valentine’s Day. You see, I love my girl’s tubie.
It saved her life.
But, I am not going to lie, I had a terrible time coming to terms with it. When her g tube was first proposed Esmé was three months old. I was resistant. Esmé had aspirated severely and was already Failure to Thrive, but I felt the tube was giving in to Esmé being sick. I thought it would make her different. I thought our lives would change.
Looking back, I should have known that it wasn’t the tube that meant she was sick and different. She was sick and different. The tube was about helping her be less sick. It was about keeping her alive because she was different: She was special and fragile and, at the same time, super tough…she just needed a hand. And, our lives had already changed. We just didn’t totally understand it yet.
Had I known more about tubies, had I known that there was a proud and invested community waiting to embrace us, or what freedom and safety a tube could provide my child, or the stress and fear that the tube would alleviate…I would have been less resistant.
My daughter has an undiagnosed neuromuscular/neurogenetic disorder. She has involvement with multiple systems. Her list of specialists is pretty impressive: neuromuscular, neurogenetic epileptologists (yes, plural), GI, pulminologists, endocrinologist, cardiologist, and so on. Yet, with all of these issues, I fixated on the g tube more than any other procedure she has undergone…and in the end it turned out to be the most obviously positive medical choice we have made so far, with the least difficulty associated with it.
You see this was a surprise to me, but dealing with her feeding tube was super easy. It was just a matter of learning how to be a confident tubie caregiver. Once I learned that I knew what was best for Esmé and her tubie, it became the simplest thing in the world to deal with. For example, it seems most kiddos who are retchy do better on a slow continuous feed…not Esmé, she does worse. And for months we tried the slow feeds because that was what the doctors suggested. Now, I am confident enough to tell the doctors that this doesn’t work for my child.
I found my way onto the Feeding Tube Awareness facebook page by some bizarre accident. No one told me about FTA in the hospital. I just came across it searching for anything relating to feeding tubes. And I was all “OH MY GOD, there are more of us out there!”
I stalked for awhile, but when I had my first issue with the tube–granulation tissue–I turned to the Feeding Tube Awareness community. The surgeon’s office had put silver nitrate on the tissue and sent us home with instructions to use split gauze. It was messy. Although it worked initially, the granulation tissue was back in a matter of days. And the split gauze looked so uncomfortable. The doctor’s office told me there was nothing more they could do to help with the tissue: “It just happens,” they said.
But on the Feeding Tube Awareness I found a bunch of people who were not satisfied with “It just happens.” I received a bunch of helpful, experienced-based comments on my post. The next thing I knew I made my first order of cloth g tube pads, and the granulation tissue was gone…and I was passing this information along to every medical professional who noticed the cute pad or her picture-perfect stoma.
The feeding tube community is so amazingly knowledgable, thoughtful, and informative. The extent to which people will go to advise and aid their fellow tubies never ceases to inspire me. I am so proud to be a member of this tribe.
A sigh of relief
Of course, the most phenomenal part of Esmé’s tubie is the progress she has made. She is stronger and healthier. While, even with the tube, Ezzy doesn’t grow quickly, I know I am getting her the right amounts of the right foods every day. And, since she is on anti-convulsants now, I also know she gets all of these ever-important meds.
And, her airway is safer.
Within hours of getting her tube Esmé was pink–a color she had never been before. Within weeks of getting her tube Esmé had stopped making the purring sound that used to accompany her always. Within months she had her first respiratory illness–and did not develop pneumonia as would have been expected.
The tube helped protect her both by reducing the risk for aspiration and by helping to keep her well-nourished and strong enough to fight off sickness.
How do other parents do this?
But the most surprising part to me is how much the tube has become a part of our lives. I honestly forget that all children don’t come with these conveniences…other parents complain about their children refusing food, spitting out medications, and getting dehydrated, and I find myself thinking: “Just use the tubie, geez!” and then: “Oh right! How do they do it? Poor people, no tubie!”
It is funny, but the confusion shows the simple truth that Esmé’s tubie has become a part of our lives, a part of keeping her safe, a part of her.
It’s not going away any time soon.
Which is good, because I love Esmé’s tubie.